Scottish Learning Disability Awareness Week 2014

The final item of business is a members’ business debate on motion S4M-09911, in the name of Jackie Baillie, on Scottish learning disability awareness week 2014. The debate will be concluded without any question being put.

Motion debated,

That the Parliament notes that 19 to 24 May 2014 is Scottish Learning Disability Awareness Week; understands that there are at least 120,000 people who have learning disabilities in Scotland and that, of that number, 26,000 adults and 16,000 children and young people are known to be receiving social care and educational support from local authorities; reflects on what it considers the significant progress made over the last few decades to improve access to education and employment for people who have learning disabilities and for them to live in their own communities as a result of the closure of long-stay institutions; is concerned that people with learning disabilities continue to experience significant health inequalities, have lower access to employment and education than the general population and continue to experience isolation, loneliness and bullying in their communities; acknowledges the role of family carers in supporting their loved one to live an independent life and their need in turn for access to peer support and respite opportunities; welcomes the publication in the summer of 2013 of The keys to life: Improving Quality of Life for People with Learning Disabilities, the Scottish Government’s 10-year strategy to improve the quality of life for people who have learning disabilities; recognises the work of the many organisations across Scotland that are providing innovative support and advocacy to people with learning disabilities and their family carers to overcome these challenges and co-produce support and services that empower people with learning disabilities to live the life that they want to live; congratulates in particular ENABLE Scotland on reaching its 60th anniversary in 2014, and notes calls for the voluntary and statutory sectors to continue to work in partnership with people who have learning disabilities to develop communities, attitudes and support that will enable people with learning disabilities throughout Scotland to access their human rights.

It gives me great pleasure to speak to the motion in my name, congratulating Enable Scotland on its 60th anniversary.

Many members may be wondering why I am wearing a tartan scarf when the sun is splitting the skies. Those among them who have kept up will know that this is Enable Scotland’s 60th anniversary tartan. I see members wearing scarves and ties in the chamber today, and I congratulate them on remembering, because not all of us managed to do so.

The 60 threads in the tartan are for each of the 60 years that Enable has been around. As some members may know, the two strands of bright orange that run through the tartan are for every boy and girl who continues to be born every day in Scotland with learning disabilities or to develop them in later life. So, job still not done.

It is also a significant year for other organisations that work with people with learning disabilities. I am pleased to give but a small mention to People First, which is celebrating its 25th anniversary this year.

We have come a long way since 1954, when five families came together to talk about forming an organisation in Scotland to support parents, like themselves, who were raising children with learning disabilities. We are indebted to those families for their vision, which has created Enable Scotland. The organisation now has 44 local branches, employs 1,700 people and has 4,000 members throughout Scotland, many of whom are sitting in the public gallery today.

Enable Scotland celebrates 60 years of campaigning for and with people with learning disabilities so that they can play a part in their communities, have an education, have a job and develop friendships. It is not just about campaigning; it is about doing, too, and providing services for some 2,000 people throughout the country.

I want to reflect briefly on what it must have been like all those years ago, so that we can truly understand the journey that we have been on together and which Enable Scotland has played such a critical role in leading and shaping. Sixty years ago, a parent of a child with a learning disability would have been made to feel ashamed. Learning disability was a real stigma, and some parents hid themselves away, never mind their child. There were very few services and parents were often left to cope on their own.

Children who had a learning disability had no entitlement to go to school. There was no option for someone who had a learning disability to live independently. The only choice was institutional care or remaining in the family home. By 1970, there were 22 long-stay hospitals in Scotland, housing more than 7,000 children and adults with learning disabilities. Employment was certainly not an option for people who had a learning disability.

There is much that we have achieved since then but much more that we have to do. I am proud that it was a Labour Government, in the first session of the Scottish Parliament, that developed “The same as you?”, which enjoyed cross-party support. Those members who were involved at the time will recall that it started life as a document owned in the main by civil servants. There is nothing wrong with that, but when the minister—who I recall was Iain Gray, when he was Deputy Minister for Health and Community Care—threw open the doors and invited in people with learning disabilities and their representative organisations to help to shape the document, the dynamics changed completely.

This was now about a living, breathing document that offered a vision for the future. Yes, it was challenging, and rightly so. It contained 27 recommendations, covering everything that would help to end discrimination and support people to live independent lives and get educational and employment opportunities.

The most significant event for me was the end of long-stay institutions such as Lennox Castle, which I knew of because I happened to live nearby. About 1,000 people were moved out of hospitals and into homes. The overwhelming majority of people with learning disabilities now live in their communities with packages of care and support.

Yes, we have come a long way but let me share with members some statistics that show that we absolutely need to stay focused. Nine out of 10 children with a learning disability are bullied. One in four children with a learning disability is hit or punched. Nine out of 10 people with a learning disability are the victims of hate crime. Only one in three people with a learning disability has at least one close friend, and only one in four people with a learning disability has a job or is in training.

I very much welcome the Scottish Government taking “The same as you?” further by producing its own document for the next 10 years—“The keys to life”—which continues the journey that we started with “The same as you?”. It is not surprising that there is still much to do in securing opportunities for training, employment and independent living and in ending discrimination and abuse.

I do not want to sound a discordant note but, as money is ever tighter in the public sector, we need to keep an eye out for service cuts and a return to the past in the guise of service redesign, and we need to keep a clear eye on care charging, which is still a postcode lottery across the country.

Members will know that I consider it a great privilege to be the convener of the cross-party group on learning disability—I have had the role for the past 12 years. I cannot compete with Enable’s 60 years, but members would all shout at me to say that I look too young for that, anyway—[Laughter.] Okay—members laughed at me; thank you.

Members know that I would never waste an opportunity such as this debate to raise issues with the minister. I will raise only three issues. I ask the minister to update Parliament on progress with “The keys to life” and to indicate the priority areas for action. We have invited him to next week’s meeting of the cross-party group on learning disability, but he has not replied yet. I look forward to him saying yes—he likes saying yes—in the context of the debate.

The minister will be aware that I have written to him about the potential misuse of the power under section 13ZA of the Social Work (Scotland) Act 1968 in order to move people who have learning disabilities into residential care settings. We look for an assurance that he will consider that carefully.

Enable Scotland is keen to hear the minister’s views on concessionary travel and the impact of the loss of the lower-rate mobility element of disability living allowance on access to a bus pass through the national concessionary travel scheme for people who have learning disabilities. Will the minister commit to looking at that?

I do not want to risk your wrath, Presiding Officer, so I will conclude by congratulating Enable Scotland on its 60th anniversary. It has campaigned and fought for thousands upon thousands of people with learning disabilities, and I wish it every success for the next 60 years.

I congratulate Jackie Baillie on securing this members’ business debate about an important subject in which Scotland has made considerable progress over the years, not least because of the work done by Enable, the 60th anniversary of which we celebrate in part with the debate.

As a medical student, I was strongly influenced in my desire to go into psychiatry by the work of Erving Goffman, which was most celebrated by the film “One Flew Over the Cuckoo’s Nest”. At that time, institutionalisation applied not only to those with mental health problems but to those with learning disabilities.

When I went to work in Forth valley in 1970, the Royal Scottish national hospital, which housed some 1,800 patients with learning disability, was in that area. The transformation in the lives of those with learning disability when the move into the community and, ultimately, the closure of the hospital occurred is one of the most impressive changes in our services in the past 50 years.

That change was made possible by good transitional funding. That was unique because, in most other cases in which one tries to close an institution, one has to close it and then use the money to create the community resources, which has been a major problem with mental health institutions.

I remember many examples of people whose lives were improved by that move. One particularly moving example, about which I learned about as a member of the Parliament’s Health Committee, involved a nursing team at Lynebank hospital that had helped a patient achieve continence as part of his journey to independence. That one aspect of his health had taken thousands of hours of support, but its ultimate achievement had so empowered that individual that it transformed his life.

Alongside that major change on institutionalisation, when the Labour Party came to power it introduced a general approach that those with learning disability and indeed other disabilities should be part of mainstream education wherever possible. That has not always been easy, but it was the correct move and is to be supported.

The other thing that occurred was that many community organisations began to engage much more positively with those with learning disability. Artlink Central, which is located in my constituency, celebrated its work in the Parliament recently with a very successful presentation by a group with learning disability.

Local volunteers in the Forth valley retired and senior volunteer programme support groups for those with learning difficulties, such as the walking group, which is important for improved physical health. Many of those with learning disability, like those with mental health problems, do not have particularly good physical health.

My final example is an organisation of which I am proud to be the current patron: Trellis, which is the overarching national body for therapeutic gardening. In includes 160 groups in Scotland, which help many people with learning disability to enjoy horticulture.

As Jackie Baillie said, there are many challenges still ahead, and we are on a journey. I would like to draw the minister’s attention to one challenge, which relates to personal history. I grew up with a much-loved aunt who had Down’s syndrome. Ultimately she had to go into a care home, but she was lucky, because she went into a specialist care home. Today, far too many people with learning disability who, perhaps because of loss of family or increasing frailty have to go into a care home, are not able to go into a specialised care home. They can be in a care home with much older people, which is quite unsuitable. That problem needs to be addressed soon.

I hope that Enable, through its campaigning, will achieve even greater equity and fairness for those who have learning disability and continue the good work that it has done over the past 60 years.

I am sometimes asked what I am proudest of from my time in politics. I always say, “The same as you?”. That is not because it was the first policy document that I was involved in producing, but because it did something that most people considered to be impossible at that time. As Jackie Baillie outlined, it articulated the authentic voice of people with learning disabilities and expressed their hopes, dreams and aspirations. Mary Scanlon is right: for once, a Government document turned aspirations into real policies and actions.

At the time, 15 years ago, I had some idea just how far those aspirations were from the reality of the situation. Some of my family members, friends and—probably not to my credit—not one but two wives had worked and trained in Gogarburn long-stay hospital, so I knew what the reality of life was for many people with learning disabilities. So it was that, in another proud ministerial moment—the last ministerial engagement that I undertook as Deputy Minister for Health and Community Care—I formally, finally and permanently closed down Gogarburn hospital.

To this day, my wife and I sometimes meet people whom she knew when she worked there and they were patients living in wards. They have, for years, been living their own lives, and living freely. I know, too, that my own cousin, who is profoundly disabled, has lived a life that is, although not easy, far fuller than we could ever have imagined when he and I were children together.

Members should be in no doubt that this has been a real liberation struggle, and a victory not only for justice and equality, but for freedom. It has been a struggle nonetheless, and that liberation would never have happened without the parents, activists and organisations who fought for it alongside their sons, daughters and friends. Not least among those organisations are Enable Scotland, which celebrates its 60th birthday this year, and Elcap, in my constituency of East Lothian, which celebrates its 25th birthday this year.

As Jackie Baillie made clear, the struggle will not be over as long as people with learning disabilities still face systematic unemployment, inappropriate placements in care homes and bullying on our streets. The truth is that no revolution is complete until we have changed ourselves and our attitudes, and that has still to happen.

I welcome the fact that the Scottish Government has taken up the baton with “The keys to life” report. I say to Enable and its sister organisations, “Well done,” but I also say, “You know, and we know, that the struggle continues.”

I welcome Scottish learning disability awareness week and thank Jackie Baillie for the opportunity to discuss the issue in Parliament. I congratulate Enable Scotland on its 60th anniversary, and I thank all the volunteers and helpers who have supported the organisation throughout its history.

People with learning disabilities have a significant and lifelong condition that starts before adulthood and affects their development. Although those people are just like you and me and should be treated as such, they are more likely to die young and have mental health problems and to be exposed to poverty, poor housing, lack of experience and employment, social isolation, bullying and discrimination—that is a mouthful, but it is true. They have lifelong experience of a lack of choice and opportunities and of significant barriers to accessing services.

That is why it is essential to demonstrate that people with learning disabilities are valued and respected as equal members of society. Generally, more information is now available, but issues remain about how people access it. Families are unaware of the support to which they are entitled and where they can go to get information. As a consequence, they do not get all the help that they really need. Scottish learning disability awareness week is a great way to combat the issue of awareness.

I especially want to mention Thomas Fortune work centre in Glasgow, which has recently secured five-year funding from the Glasgow learning disability partnership, with the likelihood of an extension. Only 5 per cent of people with learning disabilities in Glasgow are in paid employment; the centre, which specialises in providing a route to employment and meeting the social support needs of people with learning disabilities, is one of the very few projects in Scotland that provide a bridge between social care and open employment. I should also mention the Glasgow Disability Alliance, which is led by disabled people and has a membership of more than 1,500.

People with learning difficulties in minority communities face double discrimination in accessing public services. The advice that I would offer in that respect is that local shops, faith and community leaders and centres and organisations such as Enable Scotland can be used to pass on information. Moreover, in order to promote full and equal access to public services, we must meet the language requirements of the minority ethnic individuals who need to use them.

Like my friend Jim Eadie, I commit my support to the organisations who carry out this marvellous work 24/7.